Mourning Jess Jacobs

Yesterday, Jess Jacobs died. Like so many others on Twitter, I knew Jess just well enough to be profoundly frustrated as I watched helplessly as the healthcare system failed her again and again. Today, the small world of Internet patient advocates mourn for her across blogs and twitter. The world of people who are trying to fix […]

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Expert Healthcare Hackers

(This is a preview of a talk that I am going to give next week at Healthcare::Refactored, with Karen Herzog) There are two definitions of the word “Hacker”. One is an original and authentic term that the geekdom uses with respect. This is a cherished label in the technical community, which might read something like: “A person adept at […]

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How to change the world over the weekend

I love hackathons. I love winning them. I love competing in them. I love winning them.  I love judging them. I also love not losing them. This weekend, I am acting as a mentor to the first Health 2.0 hackathon in Houston Texas. As far as I know (which is not that far, really) this […]

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The Patient Scientist

Over on the Society for Participatory Medicine mailing list we have been discussing the recent Readers Digest blog post titled: 50 things your nurse wont tell you. You really have to read it before reading this article, this post will only make so much sense without that. I suggested that part of being an epatient […]

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Practical collaborative document writing for patient communities

Hi, I have a lot of experience with collaborative document writing, and now, in my role with Cautious Patient Foundation, I have been providing technical help to several patient communities. I helped write the security standards for the NWHIN Direct project and I am currently working with the e-patient/QS community to create a document detailing […]

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Sharks, Bees and Privacy

Hi, I am happy to announce that my new article on healthcare privacy and interoperability has been accepted in the Journal of Participatory Medicine. I am not against privacy in healthcare, but I am against the notion that privacy concerns should trump issues relating to good healthcare. You can read the full article here: http://www.jopm.org/opinion/commentary/2011/07/05/sharks-bees-and-health-privacy-paranoia/ […]

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A patient by any other name

Recently two communities have been discussing a pretty basic question. What should we call the artist formerly known as “patient”? The two communities are the e-patient community and the “patients” in the patient safety movement, specifically those that met at the last IHI meeting. But why would we want to call patients anything other than […]

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